I am in a very similar situation to you. I had my lumpectomy and sentinel node biopsy on 13th May 2010. I am ER and PR positive. I have tubular carcinoma of 6mm with a tiny, tiny percentage of DCIS. I have clear margins of 11mm and 12mm - I know its huge but I instructed my surgeon to go for it.Its a very, very slow growing, non-aggressive breast cancer. My oncologist warned me that I was very fortunate to have such a "trivial cancer" his phrase - and the BIGGEST DANGER to someone in my position was OVER TREATMENT. He said he did not want to put me on any chemo and no hormone or other drugs. I had my Radiation Oncologist meeting last week and I had read all the reports referred to above which portray radiation as statisitically important in ones survival as well as in relation to local or distant recurrences. However, those statistics being quoted are not JUST stats for women with our type of low level, early stage, non-aggressive cancers. They lump everyone in together and then come up with averages. That is why accepting that bald statistics like women who forego radiation face a 50, 60 or 70% chance of recurrence. This is what you need to do Cheryl - you log on to Adjuvent! and fill in all your personal cancer stats [or ask your Radiation Oncologist to do it for you and supply you with the stats a few days before your appointment]. I did this myself and also the Radiation Oncologist did it. He recommended I receive the full blast 6 weeks whole breast radiation and one week of boost. I then asked to go over my personalised stats. This is what they revealed - I have a 5% chance of a LOCAL recurrence of breast cancer over 10 years! If I receive the radical radiation he proposes, my chance of a local cancer recurrence drops to 2%. Yes, folks thats right. I get a whole breast irradiated and face the terrible morbidity associated with that, all for a measly 3% increase in local recurrence rates over 10 years. Quite frankly, I would rather have my breast more closely monitored over the next 10 years than have radiation. You know what else they don't tell you? If you get radiated, then its a one shot deal. So if cancer returns and god forbid its a nastier form, then radiation is not an option a second time around. That means a total mastectomy! Yet if I opt for closer surveillance, and cancer is found, I can elect to have another lumpectomy - no problems. And if its more serious I can reassess my stats and choose or not choose radiation. The other thing I find interesting is Radiation Oncologists lying my omission or failing to disclose full facts about radiation side effects. It was fascinating to see my guys verbal gymnastics. When I asked as morbidity, he referred to relatively mild things like pinking of the skin, maybe some sunburn so I pressed harder and he offered up blistering. Hmm, Blistering, I asked if this meant like little water blisters you get on your finge rif you burn yourself or were we talking about large liquid filled blisters that hung off one's breast and burst and could get infected with pus running out of them. He admitted they could be big blisters. I then said he saw this stuff all the time but it was hard for me to imagine - could I see some pictures of a mild case and a bad case. Guess what term he then commenced using as soon as I indicated I wanted to see some photos - "ulcerations," Yes, that was how the language evolved as I pressed for more information. I have independently researched morbidity associated with radiation and its really, really serious for many women and can last a year or in some cases only reveals itself many years later. Cheryl, I would therefore urge you NOT to accept the bald over arching statistics based on large populations as the overwhelming majority involved have far, far more serious cancer than you or I do and the conclusions are NOT as relevant to women in our situation. DO not under any circumstances agree to be radiated until you have had your own personal stats, based on your diagnosis and your histopathology reports inputted into eg., Adjuvant! and you get a copy of it and understand the stats that apply to you. I cannot see in cases of early breast cancer like ours when the cost/benefit analysis of radiation - in my case a measly 3% - can justify the terrible damage radiation does. Nor can it be justified when you realise it is a one shot deal and once you use it for that breast, thats it. You can't do it a second time. Monitoring every 6 months could be seen as an inconvenience to some women but I would prefer it any day over dealing with breast necrosis, skin retraction, lung occlusions, blisters, radiation burns, ulcerations and all the other notorious sequelae from radiation. You need to not let the doctors take over and tell you what to do. You need to be pushy and skeptical. When I pressed and pressed the Radiation Oncologist as to why he was recommending scorched earth radiation for me - given my brilliant stats without it and minimal advantages with it - he only came up with two answers. 1. My age [I am nearly 52] and 2. His radiation staff had empty dairies!!! No need to tell you which one I suspect was the more important one for him. My morbidity fears did not even rate even though I had a strong history of skin problems, poor wound healing and huge skin allergies. I also have large breasts which is a notorious factor in worse morbidity. It seems all his radiology team met and discussed my case and they agreed I needed full breast radiation. I was told this in a manner I think to influence me into going along with their agenda. Needless to say I was totally unimpressed with the recommendation and the reasons given in support of it. Please do not be a passive patient in this. With your stats, it is highly likely your 10 year danger of a local relapse is close to mine. Remember: its just a local relapse - its not distant metasteses and its nor death! Fight hard for ALL your personalised stats [local relapse, ipsolateral relapse, distant and death] over 5, 10 years as well as true facts about radiation morbidity. I swear - getting the truth out of them is like pulling teeth from a bear with a pair of pliers but stick with it and DO NOT agree to radiation until you have ALL your personalised stats and time to read and study up on your options.
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Hello Cheryl,
I am in a very similar situation to you. I had my lumpectomy and sentinel node biopsy on 13th May 2010. I am ER and PR positive. I have tubular carcinoma of 6mm with a tiny, tiny percentage of DCIS. I have clear margins of 11mm and 12mm - I know its huge but I instructed my surgeon to go for it.Its a very, very slow growing, non-aggressive breast cancer. My oncologist warned me that I was very fortunate to have such a "trivial cancer" his phrase - and the BIGGEST DANGER to someone in my position was OVER TREATMENT. He said he did not want to put me on any chemo and no hormone or other drugs. I had my Radiation Oncologist meeting last week and I had read all the reports referred to above which portray radiation as statisitically important in ones survival as well as in relation to local or distant recurrences. However, those statistics being quoted are not JUST stats for women with our type of low level, early stage, non-aggressive cancers. They lump everyone in together and then come up with averages. That is why accepting that bald statistics like women who forego radiation face a 50, 60 or 70% chance of recurrence. This is what you need to do Cheryl - you log on to Adjuvent! and fill in all your personal cancer stats [or ask your Radiation Oncologist to do it for you and supply you with the stats a few days before your appointment]. I did this myself and also the Radiation Oncologist did it. He recommended I receive the full blast 6 weeks whole breast radiation and one week of boost. I then asked to go over my personalised stats. This is what they revealed - I have a 5% chance of a LOCAL recurrence of breast cancer over 10 years! If I receive the radical radiation he proposes, my chance of a local cancer recurrence drops to 2%. Yes, folks thats right. I get a whole breast irradiated and face the terrible morbidity associated with that, all for a measly 3% increase in local recurrence rates over 10 years. Quite frankly, I would rather have my breast more closely monitored over the next 10 years than have radiation. You know what else they don't tell you? If you get radiated, then its a one shot deal. So if cancer returns and god forbid its a nastier form, then radiation is not an option a second time around. That means a total mastectomy! Yet if I opt for closer surveillance, and cancer is found, I can elect to have another lumpectomy - no problems. And if its more serious I can reassess my stats and choose or not choose radiation. The other thing I find interesting is Radiation Oncologists lying my omission or failing to disclose full facts about radiation side effects. It was fascinating to see my guys verbal gymnastics. When I asked as morbidity, he referred to relatively mild things like pinking of the skin, maybe some sunburn so I pressed harder and he offered up blistering. Hmm, Blistering, I asked if this meant like little water blisters you get on your finge rif you burn yourself or were we talking about large liquid filled blisters that hung off one's breast and burst and could get infected with pus running out of them. He admitted they could be big blisters. I then said he saw this stuff all the time but it was hard for me to imagine - could I see some pictures of a mild case and a bad case. Guess what term he then commenced using as soon as I indicated I wanted to see some photos - "ulcerations," Yes, that was how the language evolved as I pressed for more information. I have independently researched morbidity associated with radiation and its really, really serious for many women and can last a year or in some cases only reveals itself many years later. Cheryl, I would therefore urge you NOT to accept the bald over arching statistics based on large populations as the overwhelming majority involved have far, far more serious cancer than you or I do and the conclusions are NOT as relevant to women in our situation. DO not under any circumstances agree to be radiated until you have had your own personal stats, based on your diagnosis and your histopathology reports inputted into eg., Adjuvant! and you get a copy of it and understand the stats that apply to you. I cannot see in cases of early breast cancer like ours when the cost/benefit analysis of radiation - in my case a measly 3% - can justify the terrible damage radiation does. Nor can it be justified when you realise it is a one shot deal and once you use it for that breast, thats it. You can't do it a second time. Monitoring every 6 months could be seen as an inconvenience to some women but I would prefer it any day over dealing with breast necrosis, skin retraction, lung occlusions, blisters, radiation burns, ulcerations and all the other notorious sequelae from radiation. You need to not let the doctors take over and tell you what to do. You need to be pushy and skeptical. When I pressed and pressed the Radiation Oncologist as to why he was recommending scorched earth radiation for me - given my brilliant stats without it and minimal advantages with it - he only came up with two answers. 1. My age [I am nearly 52] and 2. His radiation staff had empty dairies!!! No need to tell you which one I suspect was the more important one for him. My morbidity fears did not even rate even though I had a strong history of skin problems, poor wound healing and huge skin allergies. I also have large breasts which is a notorious factor in worse morbidity. It seems all his radiology team met and discussed my case and they agreed I needed full breast radiation. I was told this in a manner I think to influence me into going along with their agenda. Needless to say I was totally unimpressed with the recommendation and the reasons given in support of it. Please do not be a passive patient in this. With your stats, it is highly likely your 10 year danger of a local relapse is close to mine. Remember: its just a local relapse - its not distant metasteses and its nor death! Fight hard for ALL your personalised stats [local relapse, ipsolateral relapse, distant and death] over 5, 10 years as well as true facts about radiation morbidity. I swear - getting the truth out of them is like pulling teeth from a bear with a pair of pliers but stick with it and DO NOT agree to radiation until you have ALL your personalised stats and time to read and study up on your options.
June 19, 2010 - 7:17amThis Comment
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